Sunday, February 9, 2014

Bad days, bad timing

Reagan woke up crying this morning, turning our fears a reality. I was worried she wouldn't be able to hold out until Monday (when she's supposed to have an endoscopy, sigmoidoscopy, & impedance study)...her good days started on Monday last week (except for the nausea) and a seven day good day streak is longer than her norm lately. She settled down this morning after a dose of clonidine, but she didn't doze off, she stayed awake and quiet but very stressed. She had another major meltdown late afternoon. Crying and holding her breath til she turned purple and shaking uncontrollably! It was awful! My poor baby! She goes through so much! Considering her current condition, I'm 90% certain I'll have to cancel her procedure tomorrow! Which I really hate because she's been going three days now without nexium (and suffereing the consequences...burpy, hicuppy, and I'm sure refluxy), just to have these tests  performed! But I can't justify putting her at risk by putting her under anesthesia when she's already so stressed!! Anesthesia is risky enough for a kid with mito! I really wanted to get these procedures out of the way, especially since we're meeting with the doctors this Thursday for a care conference (that includes us this time)! It's just so difficult to schedule anything like this in advance! We never know how she's going to be doing! I'm going to just play it by ear. I'll switch her over to pedialyte at 6:30am and watch her closely when she wakes up. Of course, if she's up crying throughout the night, I'm going to take that as a sign that we need to just cancel it. Hopefully we'll be able to get her back on the schedule quickly and that everything will work out in our favor next time around. Please keep her in your prayers! We want to have these tests done but we need to do them when it's best for her! 
This is how I found her this morning! Completely upside down in bed! 

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